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I was in Omaha, Nebraska Friday and Saturday to speak at the University of Nebraska Medical Center’s Education Day (Nebraska Medicine). I was talking to a lot of Mom’s whose kids were recently diagnosed with CF. My hope was to inspire and education them about CF and advocacy.
My presentation, interrupted by my own tears, was a reminder that grief, pain and emotion come out whenever they please. I felt like I was choked up, crying/sobbing/speechless for a long time during that presentation.
What happened? After a few slides I showed the video with me talking about the girls and Trikafta. Trikafta came out in October of 2019. Trikafta is a CF modulator drug that uses elexacator/tezacaftor/ivacaftor to correct the underlying condition of the disease. (More details here: https://www.trikafta.com/…/files/patient-brochure.pdf). The drug worked for Molly, but after 9 days on it Emily had a severe reaction that caused her to stop the drug. We were all devastated. The drug brought with it so much hope.
So, when I saw the video again, the video I showed at our last fundraiser and honestly have watched a lot due to sharing, hit me hard Saturday. I couldn’t even get the good news out because I was trying really hard not to ugly cry even more than I already was.
I realized then, (and wish I could have expressed it at the time) that having children with CF is a trauma. Sometimes its daily, sometimes monthly or yearly, but it’s a constant trauma. I have always known this but didn’t realize that it is like a death too. Sometimes the grief just comes over you and there is no stopping it. I have always said that as a family we have Post Traumatic Stress from this disease. We all have it in different ways and to different degrees.
After that video played, I was feeling all the emotion, and seeing the reel in my head. I had driven the Trikafta up to Emily at MSU to give it to her in 2019. I videotaped the event because the joy was so high. Finally, there was hope for a long life. Then 9 days after taking it we were in the ER due to a severe reaction. She had to stop the drug.
Years later, January 2023 an allergist is desensitizing her on the drug. We don’t tell anyone in case she has another reaction. This is Emily’s story to tell so I won’t elaborate much. But Thursday she said I could tell people she was successfully on the new drug.
In Saturday’s speech my joy and pain collided. During my presentation.
I was able to get back on track but sweat was pouring down my back, my hair was all messy from tears/sweat, and I felt like I let everyone down.
I quickly learned it was okay. One of the nurses, Heather, walked up a tissue so I could wipe my eyes. And as I looked into the audience finally (instead of up at the ceiling), I saw others crying. CF is hard, just like life, but we are in this together. I am so grateful for my CF community.
The young, next generation of CF Moms who came up to meet me after the talk, said the kindest things to me, we took a photo and hugged. These Moms are raising kids with Trikafta, with more amazing drugs to come. That doesn’t make their life easier for those Moms, it just gives them hope. Trikafta isn’t a cure. People are still getting sick and dying from CF. But it is HOPE. Trikafta has done wonders for my girls.
Thanks to the doctors and staff at UNMC for their kind words and support. To Dr. Deepika Polineni Veeramacheneni (who spoke before me) you’re badass, smart, kind and changing the CF world for sure. I seriously got smarter just being around you.
To CF moms Amy, Devina (Devina Griffith), Kaelan, Kim and the other moms whose names escape me at this moment: thank you. We’re in this together. Cystic Fibrosis Community of the Midwest
The humor. There is always humor. I head to the airport for home after that speech. My new knee always sets off the machines at the airport. I got a complete pat down, and honestly couldn’t stop laughing. Then a man waiting for our flight asked the airline clerk if he could be moved to first class because he felt he deserved it. At my seat, the woman sitting next to me wouldn’t stop talking about her 40 pound 6 month old granddaughter. Everything is normal and funny. Life is so darn funny.
Thanks to Ali at Nebraska Medicine, Heather, Dr. Murphy, Dr. Dickinson, the social workers, Dr. Ashley, Dee….everyone. Thank you! What a great program you have! Outstanding physicians and staff. I was honored to be there.
Thank you also to Kelly J Simon Stolley who sent me the sweetest note to me after listening to my presentation which was streaming live. Your words meant so much to me.